Discussion of the NEW International Consensus Criteria

Am I missing a trick here? The ICC, is an improved version of the CCC, with no room for psychiatry - hoorah.

We have been calling this illness 'ME' for years, even through the ME/cfs, cfs/ME, cfs etc psyco era - What has changed? The Canadian Criteria, was never accepted in the UK, so how will the release of the ICC change anything? The Shrinks will never allow it.

As everyone on the forum already knows, pardon me for repeating, but, (if you don't want to read the usual rant then please ignore the next 3 paragraphs - please feel free to join me in my mantra) - using the 'boiling frog' method, the UK Government, the TV & Press - (embarrasing shisters), and the National Health Service & NICE aka the drugsters, have been utterly brainwashed by Wessely & Co, into accepting that the shrink version of ME, the 'all in the mind' illness, is the accepted 'base line' that medical science must disprove. Anything other than the psychiatry description is just theory - sorry, but when did the psychiatry model become 'fact'?

With nothing other than subjective opinion and flawed data manipulation, psychiatry's incorrect illness beliefs have evolved to become the standard model for this illness. As far as they are concerned, until proven otherwise, the illness ME (they will never refer to it with this label) is psycological, and no medical authority dares to question that 'fact' - nor would they use the ICC in patient selection criteria for research. The MRC will chose 'Oxford' everytime because that's what they always use.

XMRV clearly showed this - Wessely was immediately sure there was no XMRV in the UK - all of his patient population would prove negative because they would just be fatigued - the current scientific model in the UK, by design, selects false positives as the majority population.

the ICC does not in itself provide new evidence - ANY findings from subsequent research will just be denied in the usual way, ie : a 'breaking news' story on the Beeb and in a couple of the daily rags followed by a NICE/NHS spokesperson saying that 'evidence based' research shows that with a chat & some GET, some people improve enough to return to a minimum wage existence (if they can find an employer brave enough to offer a position to someone who can't turn up for work, or the interview in the first place or sit through the interview, or drive to work safely, or last for more than 1 day/hour without collapsing in a heap).

I don't have a response concerning the ICC from my local quack yet - she is slowly becomming more aware - its taken 7 years to ween her from the dark-side. She accepted the government version of the illness when she met us - never gave it a second thought. As far as she was concerned, any serious medical professional believes the mantra from the peer reviewed (ha) Lancet & BMJ. 99% of UK medical operatives (robots) totally believe the instructions from above.

BTW Cort - ta for removing the gagging order - even us nutty carers need to let go sometimes - this forum is about the only opportunity I get to talk/argue with someone who has any idea what I'm on about when discussing ME.

I think I'll wait for the outcome of the September gig in Ottawa before getting a balloon out.

Max - I have often wondered, don't you Brits have "Letters to the Editor" in your newspapers where carefully crafted letters on topics related to the many facets of M.E. (definitely don't use the term CFS) by many well versed people/patients can be written?

Surely letters such as these, as long as they are well written can reach many people and can slowly add another perspective to the mainstream (MRC's) dogma?

Yes we have editors - they would not print letters that deny the zeitgeist - they listen to and obey Mr Wessely - who, as the government spokesman whenever ME raises its head, reminds them these desparate attempts at arguing the case come from mentally ill people, he then adds that this incorrect illness belief is a symptom.

I do not understand how FD 23/4553/1 can go through the House of Lords, House of Parliament and various ME support groups and get nowhere - yet I, with zero knowledge in law can get a release of information - what did the others do? Did they just accept the reasons given for closure without arguing the blatent misuse of exemptions? It was suggested at the beginning that I refrain from trying to get access in case it annoys the authorities - and that came from a support group.

The UK is toast as far as ME research is concerned (and a lot more for that matter) -a bunch of mindless zombies that accept whatever they are told by the establishment.

Yes we have editors - they would not print letters that deny the zeitgeist - they listen to and obey Mr Wessely - who, as the government spokesman whenever ME raises its head, reminds them these desparate attempts at arguing the case come from mentally ill people, he then adds that this incorrect illness belief is a symptom.

I do not understand how FD 23/4553/1 can go through the House of Lords, House of Parliament and various ME support groups and get nowhere - yet I, with zero knowledge in law can get a release of information - what did the others do? Did they just accept the reasons given for closure without arguing the blatent misuse of exemptions? It was suggested at the beginning that I refrain from trying to get access in case it annoys the authorities - and that came from a support group.

The UK is toast as far as ME research is concerned (and a lot more for that matter) -a bunch of mindless zombies that accept whatever they are told by the establishment.

:Retro mad:

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From various posts here from UK members, I am starting to get a picture of the horrible conditions there. It's not that in the US we are accepted or helped but it seems that in the UK things are really really bad and I am sorry to hear that. I can feel the tremendous frustrations coming from you and I feel your pain. I wish things were different.
I would have hoped that this new paper authored by specialist in 13 different countries and hopefully accepted in different part of the world, would also help the patients in the UK. I really don't know how the politics of this illness is playing out there.
All I can say is that I wish for a better future for all of us no matter where in the world we live. Health of the people should be the first priority.
Cheers,
Nielk

[Contact the CDC. Urge them to abandon their useless definitions, which have slowed progress into the understanding of this illness and demand they acknowledge the truth. Point out to them that the 1994 definition they use now is tainted by the involvement of Michael Sharpe and Simon Wessley both with known ties to disability insurance companies. Point out that much has changed since 1994 and the Reeves definition was useless from the start.

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The CDC has always said that ME is a DIFFERENT illness to CFS, they had that written on their website for many many years (unless its been changed in the past year or two.. it was written and refered to ME not being CFS in 3 different pages on their site). Thing is.. they then never went on to define how to diagnose the ME they refered to as being different and not CFS hence doctors etc had nothing to base a different diagnoses on.

When I was in communications with the CDC in the past.. when I asked for clarification on what was written at their website about CFS and ME, they themselves couldnt send me any written answers just kept refering me to other places which didnt have the answers (didnt seem to know themselves!!! when I was asking and said they'd find out after I complained that all the places they were refering me to.. didnt know either).

They ended up saying they'd ring me to discuss the differences and on what ME was (I being ill and not good on phones never took up the CDC phone offer to discussion CFS and the difference with ME but if I find my old email communications with them (or probably still will even if I dont).. I plan to recontact and ask them if they will be refering to the international ME definition now.

All the arguements and discussions between ourselves here, isnt going to solve our issues, only actions will do. Im currently trying to figure the best time to get in CDC contact again.. now or wait till the new definition is formalised and published at which point I'd think it would get more attention rather then refering to something which is currently in draft. (I can see different pros for the different times of contact).

What we need to do is get the CDC to actually put up what ME is and how it is different to CFS, on their website eg put the new international ME definition on their website. Doing that should be easier then getting them to remove the CFS and once ME is on their website and clear.. people can easily take the ME defination to their doctors and get rediagnosed... we can make the old CFS definition meaningless. With every person getting rediagnosed it will loose some of its power (those with ME could just over power it!).

The CDC has always said that ME is a DIFFERENT illness to CFS, they had that written on their website for many many years (unless its been changed in the past year or two.. it was written and refered to ME not being CFS in 3 different pages on their site). Thing is.. they then never went on to define how to diagnose the ME they refered to as being different and not CFS hence doctors etc had nothing to base a different diagnoses on.

What we need to do is get the CDC to actually put up what ME is and how it is different to CFS, on their website eg put the new international ME definition on their website. Doing that should be easier then getting them to remove the CFS and once ME is on their website and clear.. people can easily take the ME defination to their doctors and get rediagnosed.

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Sounds good to me.
I can't take credit for that quote. I was quoting CFSNOVEL's blog which had great realistic action we can take to mo things around.

ME is, sort of, coming back to the US in ICD-10-CM. It is described exactly as CFS was in ICD-09-CM, only it is called Post Viral Fatigue Syndrome.

Doctors are told it is a conversion from a previous symptom code for fatigue/weakness, while the code for CFS is being converted to a different (new) code for generic fatigue/tiredness (it was going to be called CFS, not otherwise classified, but they seem to have dropped that as the primary name, probably because it's not allowed under WHO rules to classify the same disease two places).

I wanted to correct something I said earlier. I said Lerner wasn't cited (for HHV-6, HHV-7). He is cited for cytomegalovirus and T-wave abnormalities (his Chest 1993 paper), however.

What makes ICC different from CCC?

1) Published in a mainstream journal (nobody knew what J CFS was)

2) Updated (lots of important research has been published since 2003)

3) International (I love Canada, but the name made it sound not pertinent to other countries)

There are some concerns, but change generally comes with a bit of turbulence. I think these are things that can be worked out and mostly end up for the better all around.

If we didn't change anything for fear of shaking things up, things would stay the same and we all know we don't want that. We don't want the name to stay the same, we don't want the definitions to stay the same...

if Dr. Klimas and all these other researchers--who are not ignorant of social security and other concerns--think changing the name at this point is the right thing to do, it can't be all bad. And it is their own research which is under the name of CFS which some of the orgs are afraid of leaving behind.

Tania, I love the thought of making the old CFS definition meaningless. Even if there are some people who don't fit the ICC (even as atypical) and can't be otherwise diagnosed, they need a completely new disease title and case definition.

Do you have a link for that statement from PANDORA please? Only I would like to re-post elsewhere if I may and see if any comments are attached. I couldn't see anything on their website but it is early here and I am shattered.

In general (i.e. not directed at anyone in particular ):

Here in the jolly old UK, NICE recognise Myalgic Encephalomyelitis, Myalgic Encephalopathy and Chronic Fatigue Syndrome all as one and the same thing, and that fact alone has been and will remain an issue for some patients.

However, until such time as the authors of this new 'consensus' definition are able to prove to the authorities that they can separate Encephalomyelitis from Chronic Fatigue Syndrome more effectively than has been tried before, i.e. with new evidence, then what reason is there for NICE et al. to acknowledge this criteria?

Post Exertional Malaise does form part of the existing NICE criteria for diagnosis. Some patients might not like it but it is there:

'has resulted in a substantial reduction in activity level characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)'

PENE might sound a better description to we patients but is it able to be shown as a more medically and scientifically proven one? If PEM - for example - is more 'wishy-washy' in its' application, then let's see how PENE improves the situation.

How can it be proven that I suffer from PENE rather than PEM other than by me saying so? And 'neuro-immune' and its' use is not something that has been accepted as being applicable to my condition here in the UK - not as a term. I am afraid that that is something else these criteria will have to overcome.

Similarly, this new criteria needs to demonstrate how it can separate - if indeed it should - all those masses (apparently) of patients who have been wrongly diagnosed with 'ME' because they in fact have 'Clinical Depression' or Major Depressive Disorder (assuming the two are the same - the former from the UK and the latter I presume US).

Personally, I think this whole depression business has been overplayed and overemphasised by some, but whatever, I am no medical professional or scientist and neither am I a 'patient advocate'.

Recently there was some excitement (from me), when new research claimed able to determine sufferers of CFS from sufferers of 'depression' through use of EEG:

Yet it still remains a very murky area as far at least as I am concerned. How one can (if one should) distinguish a sufferer of depression at the point of diagnosis from a sufferer who doesn't have depression - remains (without this research perhaps) something that is far from certain.

For example: If a patient has been trying to deal with a deteriorating health condition - like I would imagine we all did - that seems inexplicable for as long as they can before going to see a doctor, what if they by then are suffering from clinical depression because of an underlying problem? In this case CFS/ME/ME.

And what is to prevent all those currently under the label of Chronic Fatigue Syndrome from now claiming that they meet the International Criteria for Myalgic Encephalomyelitis? There are already patient surveys taking place on some forums viz.: 'Do you meet the new criteria?'

And it is very very unlikely that any authority will reassess patients as stringently as perhaps it should for the simple reason it is too expensive and too much of an administrative nightmare. Not to mention the simple fact that reassessments on the scale implied are simply not done.

As I said before I am trying to work through the research attached to the 'New' International Consensus Criteria. I suspect much of it will be familiar but if that research really does endorse the views expressed by way of these criteria then there may well be a case to put before NICE et al.

Except I haven't read of anything that does enable Encephalomyelitis to be separated from CFS and/or for CFS to be dropped. All the brain anomalies etc. have been flagged up before (in terms of scan evidence), and largely and unfortunately disregarded by the authorities as being indicative of anything.

This was one reason for the move to CFS from ME in the first place and then the acceptance of Encephalopathy as another 'label'. If there is proof to back up the claim that Encephalomyelitis should be used in preference to CFS (and bear in mind the proposed changes to the WHO that Suzy indicated previously on this thread), to better reflect my disease - then I have yet to see it.

Incidentally, I wonder if this new criteria will be formally presented to the authorities or how exactly such a process of acceptance is initiated? I imagine it begins with research. If research using the new criteria can demonstrate differences between CCCME/CFS cohorts and ICCME cohorts and/or Fukuda cohorts etc. etc. then we might be getting somewhere I guess....?

CFS/ME/ME is recognised now as being a neurological condition in the UK at least. And the labels are regarded as the same - as I have said. So what is it that should make NICE et al. change their position? Perhaps I am jumping the gun and NICE should not even be approached at this point until research under these criteria can prove a case.

Still, you then have to persuade researchers to use the criteria and that is no easy matter either. Oxford etc. are just so easy to use and are approved!

Anyway, it was early when I started this post. It is now 05.40 and I need a break

The CDC has always said that ME is a DIFFERENT illness to CFS, they had that written on their website for many many years (unless its been changed in the past year or two.. it was written and refered to ME not being CFS in 3 different pages on their site). Thing is.. they then never went on to define how to diagnose the ME they refered to as being different and not CFS hence doctors etc had nothing to base a different diagnoses on.

When I was in communications with the CDC in the past.. when I asked for clarification on what was written at their website about CFS and ME, they themselves couldnt send me any written answers just kept refering me to other places which didnt have the answers (didnt seem to know themselves!!! when I was asking and said they'd find out after I complained that all the places they were refering me to.. didnt know either).

They ended up saying they'd ring me to discuss the differences and on what ME was (I being ill and not good on phones never took up the CDC phone offer to discussion CFS and the difference with ME but if I find my old email communications with them (or probably still will even if I dont).. I plan to recontact and ask them if they will be refering to the international ME definition now.

All the arguements and discussions between ourselves here, isnt going to solve our issues, only actions will do. Im currently trying to figure the best time to get in CDC contact again.. now or wait till the new definition is formalised and published at which point I'd think it would get more attention rather then refering to something which is currently in draft. (I can see different pros for the different times of contact).

What we need to do is get the CDC to actually put up what ME is and how it is different to CFS, on their website eg put the new international ME definition on their website. Doing that should be easier then getting them to remove the CFS and once ME is on their website and clear.. people can easily take the ME defination to their doctors and get rediagnosed... we can make the old CFS definition meaningless. With every person getting rediagnosed it will loose some of its power (those with ME could just over power it!).

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The CAA (CFIDS) said in its' review of these new criteria:

'The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.'

So (and if I interpret this correctly), you might in the US have the exact same situation as in the UK i.e. that ME and CFS are recognised as effectively one and the same thing.

The challenge then (as I have said), is convincing your federal agencies that Myalgic Encephalomyelitis is in fact a totally different disease that requires totally different research and totally different treatment protocols.

This here ICC doc is the clearest description of the illness we suffer from that I have ever seen. It includes a precis of biomedical research findings, and the references thereto. A diagnostic method is clearly laid out. The authors are indeed authoritative.

It's not going to enable interstellar travel, or change the world overnight - for goodness' sakes, it's a Myalgic Encephomyelitis definition, that's all. It gives us something to work with - remember those ideas from Caroline Anderson?

"Here are some suggestions for making this new definition stick:

Print out the definition and send it to every doctor you can think ofparticularly those that have treated you the worst. Explain that this definition was developed by the worlds experts in ME/CFS and that it reflects your personal understanding of your illness."

(at the least, give a nicely printed and bound (cheap folder from the stationers) copy to your own doctor, and tell them that the definition reflects your own reality, or words to that effect)

Send this definition to every reporter and editor you can think of at every blog or newspaper you can think of. Use your imagination. Write a letter to the editor for your community or city newspaper or blog. Write something you are happy with and send it to dozens of people via email or Facebook. Tweet about it.

Contact the CDC. Urge them to abandon their useless definitions, which have slowed progress into the understanding of this illness and demand they acknowledge the truth. Point out to them that the 1994 definition they use now is tainted by the involvement of Michael Sharpe and Simon Wessley both with known ties to disability insurance companies. Point out that much has changed since 1994 and the Reeves definition was useless from the start.

Contact your Congressional representatives. Include the definition. Ask for a Congressional investigation into this widespread epidemic.

Never refer to yourself has having Chronic Fatigue Syndrome ever again. You might say you have Myalgic Encephalomyelitis, the illness formerly known as Chronic Fatigue Syndrome.

Myalgic Encephalomyelitis a name with some respectability. Now if we could only learn to pronounce it ."

Max, I have made the decision not to continue posting on Phoenix Rising and I discussed this with Cort, yesterday.

I remain very concerned with the turn this thread took and with the way in which moderation complaints have been handled.

This morning, I am in the process of removing posts from threads, so I will answer your question.

As I've set out already, I have yet to read the ICC and I have made no comment about its content other than that the authors may need to review their understanding of the UK NICE guidelines and what they have written with reference to the NICE guidelines.

When I have read the ICC, I most likely won't pass copies on until the publisher's corrected version is available, later this year.

I won't be adding links for the ICC paper or documents to my sites until I have some context in which to place the ICC, which brings me back to why I'm quitting Phoenix Rising.

I entered this thread looking for clarification.

Here is a summary of most of the points for which I would still like clarification since no prior information about the development of these new criteria had been circulated and since no announcement has been made by, or on behalf of the authors of this project.

[Since composing this post which I then found I could not upload as the thread had been closed for a second time, a very brief announcement has been circulated, today, on behalf of Co-editors Bruce Carruthers, MD, CM, FRCPC and Marj van de Sande, B Ed, Grad Dip Ed, which gives no more clarification than the provisional paper, itself, apart from stating that the in print version, when published, will be accessible without charge.]​

In order to place this project into context for the readers of my sites and for those to whom I may eventually pass a copy, and in order to inform myself, I would like the following clarifications:

What the relationship is between the ICC and the existing 2003 CCC.

What the relationship is between the ICC and the CCC revision project that Lenny Jason et al have been involved in, that is, are these new criteria intended to serve as a revision or replacement for the 2003 CCC and if so, what is the status of the Jason CCC project?

Or has the ICC been produced to function alongside the existing 2003 CCC?

In the absence of a press release or any form of announcement by the authors, and since I cannot attend any Canadian or US meetings or conferences where the ICC might be discussed, it would also be helpful to know the following:

For how long this project has been in development.
Who the instigator(s) were and who owns the project.
How the panel was assembled.
Whether there is to be any mechanism for patient feedback.

So some general background to the project and its development process would be also be welcomed.

As I've said before, some of these questions may be asked by the media if patients are trying to engage the interest of journalists.

Are any of you who are urging others to pass copies to the media prepared for providing responses because there is no authors' press release or editors' notes on which you can draw or to which the media can refer, for accurate background information at this stage in the project's publication history.

I would be reluctant, myself, to brief a journalist at this stage with so many questions requiring clarification.

So I entered this thread, not to discuss the content or value of the ICC, but in order to try and establish some background information - facts not speculation, because that is the way I work.

But the response from some contributors to this thread has been disturbing.

I went onto the Facebook site of the National ME/FM Action Network, in good faith, because at that point, it appeared that the National ME/FM Action Network might be in a position to provide information.

It has since been confirmed that although the National ME/FM Action Network were instrumental in the development of the 2003 CCC (and several of the 2003 CCC authors are medical advisors to the National ME/FM Action Network), that neither Lydia Neilson or the National ME/FM Action Network "had any role in this new definition nor were they asked to participate."

"Suzy, I responded on my own behalf, because unfortunately your questions are feeding conversations that are hurtful and instilling distrust towards organizations and individuals within our community. I am sure this was not your intention..."

Why are polite requests for information being painted as "hurtful" or "instilling distrust towards organizations and individuals"?

Why did contributors to this thread seek to limit discussion of the background to this project?

It's not gone unnoticed that since Cort has come onto this thread also expressing his need for clarification that there appears to have been a bit of a sea change in at least one of those who had initially sought to stifle discussion.

As someone who owned and moderated Yahoo Group lists for a number of years, myself, I know this is not a healthy situation to have on a forum.

It's not something I want to continue to be exposed to, either in this thread or in other threads.

And speaking generally, it is disturbing on any platform to see attempts to restrict free and open discussion, whether by individuals or by representatives of patient organizations.

I hope that enquiries being made by Cort and others will result in some helpful responses, especially if the authors are not intending to put out any form of notice, themselves.

There was no justification for Marly Silverman's comments on Facebook and there was no justification for Nielk's repeated attempts to stifle the raising of legitimate questions, which Cort then went on to raise, himself.

So that's it. Yet another member lost and leaving of her own volition and one who has made considerable contributions to this site since late 2009.

I was going to ignore this post but, then I saw my name mentioned again as the reason for your irritation. I would like to clear a few points.

1- You state you have not as yet read the paper - if you would have, maybe you would have found some of the answers to your questions as it is stated that they took the CCC as a starting point and then improved on with with the new information that they now have. All their information is directly indexed to a source.

2- You state that we (all of us in this forum) do not have the answers to the questions you raised and therefor are not prepared to face journalists' questions about them. If that's the case, why state these questions on this forum? I would think that you would have much more success attempting to discuss this with one or many of the authors of the paper. In my mind, when someone raises questions that they know for a fact cannot be answered at this place, there must be another reason that they are asking the questions beside getting answers.

3- Just like you feel you have the right to state whatever you wish, I have a right to question your statements without having my name dragged in the mud repeatedly. I have been civil all along. It is no dictatorship here where no one can comment on someone's questions.

4- I would think that someone like you would appreciate being challenged. I'm sure it's not the first time. I do not believe that the sole reason you are leaving is because I commented on your questions which I thought was raised to people who would not have the answers for you. It especially irritated me that you didn't even read the paper. (your statement) Why not? I can understand if you don't wish to publish it on your websites.but, not read it at all? How do you know that all your questions are not being answered inside the paper? Is the idea of it so revolting to you that you can't even read it?

Obviously our minds function very differently. When I will send this paper out far and wide and someone will ask me who was the one who instigated this paper, I will say I don't know, I just know ALL the names of the people who authored it.(who cares who instigated it) If they will ask when did they start working on this paper, I will say I don't know but you can contact any of the authors to answer your question.(who cares when they started - how long it took?) If they will ask me what is the reference or relationship to all the other criteria, I will say that this criteria as stated by it's authors supersede all others.
When I'm sending these papers out, I am acting as a patient not an expert. As a patient I want to raise awareness. Since you are not questioning the validity of what's in the paper, I would think you have no objection for this paper to be circulated. (you only questioned the reference of how this paper came about)
Nielk

Edit: the above posts were moved here from a different thread as they did not belong in that discussion. Apologies for any confusion!

Talk about a hot topic!

...no, really, talk about it. That's right, this thread is now re-opened and back in business!

For those who'd rather simply take a moment to revel in this historic event I've split off the discussion to the new "Celebrating the ICC!!!" thread. To those seeking to hash out the details of the ICC this renamed thread is the place to continue doing so in a respectful manner.

The more observant among us may notice some past posts disappearing as previous inappropriate behavior and the surrounding discussion is slowly removed. If you're interested in knowing exactly what has been tucked out of sight PM me and I will quote the information for transparency, with the sole exception of posts deleted by their authors out of respect for their wishes.

I'm sure that most of you just want to get talking again so enough about that; let's get back to this great conversation on the ICC! :Retro smile:

Slightly off topic but has a thread ever had this number of name changes before (I initially thought they'd released another version of the ICC after less than a week, so came to look and found 21 pages)

I've read most of the paper now, including Table 1, and I'm very impressed, personally.

I do like the inclusion of 'atypical ME' for patients who don't meet all the criteria but who do have PENE.

The only thing obvious that struck me as missing, is that I didn't see see anything about taking past, or fluctuating, symptoms into account when making a diagnosis. Has anyone else spotted anything in relation to this?